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Post by Deleted on Nov 13, 2016 18:31:29 GMT -5
Yes Scottie, my husband has what you describe on his legs (for years). His doctor sent him to the dermatologist who prescribed a cream!!! Going to have him mention the metformin connection. My husband has been changing doctors trying to get one to prescribe Afrezza. Get depressed everytime with their responses, including one last week that was on the list of Afrezza prescribers. okay...going to give an update based on my husband's 6 month visit with his endocrinologist on Monday. As a refresher, we are patients at the largest medical practice in New Jersey. Endocrinologist has been unwilling to put husband on Afrezza. He is on metformin and lantus. Says that he doesn't need a mealtime insulin. We even tried an appointment with another practice where the endocrinologist was listed as one who prescribes Afrezza. (when we got there, he said that he doesn't and was unwilling to prescribe, so we went back to the original endocrinologist.) Reason for my post is that at last week's appointment, when my husband was pressing for Afrezza, endocrinologist finally admitted that he is part of a focus group on Afrezza but would not elaborate. He wants to know more before he will prescribe. But he is adamant that he doesn't need mealtime insulin, so he doesn't need Afrezza. So evident to me that they are in bed with BP.you are mistaken. Protocol says - start metformin, and then poison pills, then basal and if everything fails, ( at this stage - the condition of the patient is worse ) - then start on meal time insulin. partly because the current RAA has high probability of hypos - so why risk? they are just going by the protocol. you should have shown him the study where early meal time insulin actually caused remission. We first lose the ability to control spikes as it requires insulin dump. we are covered for basal even though our beta cells are not 100% ofcourse BP would have made trails to do so. If Mannkind had the $$$ , they would have revolutionized and changed the protocol - which was want Al wanted.
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Post by LosingMyBullishness on Nov 13, 2016 18:40:28 GMT -5
okay...going to give an update based on my husband's 6 month visit with his endocrinologist on Monday. As a refresher, we are patients at the largest medical practice in New Jersey. Endocrinologist has been unwilling to put husband on Afrezza. He is on metformin and lantus. Says that he doesn't need a mealtime insulin. We even tried an appointment with another practice where the endocrinologist was listed as one who prescribes Afrezza. (when we got there, he said that he doesn't and was unwilling to prescribe, so we went back to the original endocrinologist.) Reason for my post is that at last week's appointment, when my husband was pressing for Afrezza, endocrinologist finally admitted that he is part of a focus group on Afrezza but would not elaborate. He wants to know more before he will prescribe. But he is adamant that he doesn't need mealtime insulin, so he doesn't need Afrezza. So evident to me that they are in bed with BP.you are mistaken. Protocol says - start metformin, and then poison pills, then basal and if everything fails, ( at this stage - the condition of the patient is worse ) - then start on meal time insulin. partly because the current RAA has high probability of hypos - so why risk? they are just going by the protocol. you should have shown him the study where early insulin actually caused remission. ofcourse BP would have made trails to do so. If Mannkind had the $$$ , they would have revolutionized and changed the protocol - which was want Al wanted. Making money as an endorsement seems to be a simple job:just follow the protocol till the patient is send to the surgeon to do some amputations. Didn't they saw that every patient is unique and needs a customised therapy. If not, why go to an endo?
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Post by sophie on Nov 13, 2016 18:43:58 GMT -5
The list you're looking at is the algorithm for the customized therapy you're talking about. It has been formed by extensive research of each medication, both benefits and risk factors. Unfortunately, studies are expensive and typically only pharmaceutical companies can afford to fund them, so you'll likely get biased results from time to time.
However, these drugs have been on the market for so long that the algorithm is pretty solid for the most part. If they fail the first one, they move to the next. Fail that one, the next, and so on... that's their customized therapy.
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Post by Deleted on Nov 13, 2016 18:45:29 GMT -5
Making money as an endorsement seems to be a simple job:just follow the protocol till the patient is send to the surgeon to do some amputations. Didn't they saw that every patient is unique and needs a customised therapy. If not, why go to an endo? Exactly. One doesnt need to go to medical school to follow the protocol. each individual is responsible for their own health. you just use the doc to work with you and for you. The OP should have talked about the early insulin initiation and stuck to demannd Afrezza - samples to start with - nothing to lose - if numbers improve in 1 month - they would , then demand an rx.
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Post by peppy on Nov 13, 2016 18:47:29 GMT -5
At this point I don't need insulin at all, my levels are in normal range after having been off Metformin for more than a month (morning glucose level was 87-99, postprandial usually in the 108-110 range.) I had been dropping for a year due to weight loss and the recent additional loss seems to have normalized things. Still testing but so far so good. I have a way to go before I hit my target weight but have always planned to take 2-3 years to slowly take it off. Haven't quite caught up with my younger sibling who had gastric bypass and has lost 60 pounds since June but I'm closing in. Interesting the significant weight loss of unknown origin scottie. Your Glucose levels have normalized. I am glad the bruising /redness under the knees improved.
The reaction your body is having and metformin is not the typical story. I still think that bruising is/was liver suggestive. Just talking here, thinking it through, not always correctly. The weight loss may be liver suggestive also. Maybe metformin really turned your liver glycogenesis off.
Like an over stretched rubber band, your body, the weight loss gets to stop now and you get to find your equilibrium. If I ask my liver, liver what should I eat to soothe you today, my liver says vegetable soup. eat some rice or a potato. I am sorry, I am such a foodie.
I am glad you do not need medication to control your blood glucose levels now.
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Post by sophie on Nov 13, 2016 18:56:24 GMT -5
Where do you draw the line? What you're essentially advocating for is the reduction of a physician to a regulatory step that must be passed in order to self-medicate. I think that's an extremely dangerous proposition and one that I wish would be squashed by the docs on this board. That is not good healthcare. There is so much more to medicine than what those with degrees from the University of WebMD are aware of. I get the impression that making money on a stock is clouding people's judgements.
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Post by peppy on Nov 13, 2016 18:59:57 GMT -5
regarding protocol. algorithms posted above. this is the exciting part for afrezza/MNKD. ultra-rapid afrezza technosphere insulin is going to fit the ADA protocol! a safe easy way to take and to manage the fast acting mealtime insulin option, now being covered by insurance in the USA. weehaw. the ultra fast acting label time table is for the august 2017 conference call. timed with the scheduled television advertisement.
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Post by scottiemac on Nov 17, 2016 14:26:12 GMT -5
Just got most recent labs this morning: A1c is now 5.9, B12 is normal, sodium was 137, all kidney/liver test results in normal range. My doctor is thrilled. I would be too if the numbness was receding (there has been slight improvement in a few places) and appetite was improved. Managed bacon, small oj and tea for breakfast, tomato soup, slice of wheat bread, sugar free pudding for lunch, will have hamburger (no bun) for dinner with baked beans, maybe a frozen fruit bar and apple plus pecans as a snack and another cup of tea. Still need more protein, maybe a spoonful of peanut butter later. Progress is slow but I am determined to get back to normal weight loss, not due to illness. Shins are nearly clear. Down to losartan for bp, folic acid for low folate levels and generic protonix for acid reflux. My spouse got an all clear at 6 months after treatment for skin cancer lesion on the head. Guess it's a good day.
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Post by scottiemac on Dec 8, 2016 13:50:02 GMT -5
Follow up on the numbness from the neurologist I saw this week: severe peripheral neuropathy, likely drug induced based on my history. NOT diabetic neuropathy. Prognosis fair to good to recover over the next 6 months to a year, may have some residual hypersensitivity. Permanently off Metformin, shins have recovered to almost normal. Down to 201.8 but am beginning to actually feel hunger again. Feels like things are stabilizing. Woo hoo!
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Post by hillsave on Dec 9, 2016 10:22:43 GMT -5
Diagnosed with T2 a year ago - for 3 years prior to that doctors tried to put me on Metformin, which I resisted. After diagnosis my A1c has ranged from 6.6 to 7.2. Endo prescribed Metformin despite my request to be put on Afrezza. Endo has prescribed Afrezza for T1 previously, so is not averse to Afrezza. Would appreciate suggestions on how to convince him to allow me to take Afrezza. Also welcome suggestions for medical literature citing the drawbacks of Metformin. I have T2 and have been using Afrezza ONLY for 21 months. My GP gave me the script. 2016 Empire plan told me I needed a letter of medical necessity. I had to go to an Endo. I paid for Afrezza myself for 4 months until I insisted my new Endo write the letter. He saw my A1C go from 6.4 to 5.5 and I am a Carb junky. My BG rarely goes over 140. Without Afrezza it was going to 260-320. You can email me at hillsave@aol.com and I can give you more help. By the way my 27 yo son is T1 and using Afrezza for 20 mo. His life has changed so much. He's on top of the world.
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Post by rockstarrick on Dec 9, 2016 10:51:05 GMT -5
Diagnosed with T2 a year ago - for 3 years prior to that doctors tried to put me on Metformin, which I resisted. After diagnosis my A1c has ranged from 6.6 to 7.2. Endo prescribed Metformin despite my request to be put on Afrezza. Endo has prescribed Afrezza for T1 previously, so is not averse to Afrezza. Would appreciate suggestions on how to convince him to allow me to take Afrezza. Also welcome suggestions for medical literature citing the drawbacks of Metformin. I have T2 and have been using Afrezza ONLY for 21 months. My GP gave me the script. 2016 Empire plan told me I needed a letter of medical necessity. I had to go to an Endo. I paid for Afrezza myself for 4 months until I insisted my new Endo write the letter. He saw my A1C go from 6.4 to 5.5 and I am a Carb junky. My BG rarely goes over 140. Without Afrezza it was going to 260-320. You can email me at hillsave@aol.com and I can give you more help. By the way my 27 yo son is T1 and using Afrezza for 20 mo. His life has changed so much. He's on top of the world. Thanks for sharing how Afrezza has impacted your lives, stories like this really need to be heard !! It would be great if you could share this with Mike Castagna, (@castagna2011) and Mannkind, (@mannkindcorp) on twitter. Thanks again Merry Christmas 🎄
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Post by hillsave on Dec 9, 2016 11:11:06 GMT -5
I have T2 and have been using Afrezza ONLY for 21 months. My GP gave me the script. 2016 Empire plan told me I needed a letter of medical necessity. I had to go to an Endo. I paid for Afrezza myself for 4 months until I insisted my new Endo write the letter. He saw my A1C go from 6.4 to 5.5 and I am a Carb junky. My BG rarely goes over 140. Without Afrezza it was going to 260-320. You can email me at hillsave@aol.com and I can give you more help. By the way my 27 yo son is T1 and using Afrezza for 20 mo. His life has changed so much. He's on top of the world. Thanks for sharing how Afrezza has impacted your lives, stories like this really need to be heard !! It would be great if you could share this with Mike Castagna, (@castagna2011) and Mannkind, (@mannkindcorp) on twitter. Thanks again Merry Christmas 🎄 Mike knows all about me. He helped me with the medical necessity letter. My Endo and I actually almost got into a fight. I was ready to punch his lights out. He was a non believer and thought in Feb they were going out of business. If you saw the letter he wrote you would think he was bipolar. My control allows me to eat what and when I want. Even when I'm sleeping and eating in the middle of the night. I love it. I challenge anyone to have a lower A1C than me taking any other meds. Won't happen.
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Post by nylefty on Dec 9, 2016 11:36:54 GMT -5
Thanks for sharing how Afrezza has impacted your lives, stories like this really need to be heard !! (snip) Mike knows all about me. He helped me with the medical necessity letter. My Endo and I actually almost got into a fight. I was ready to punch his lights out. He was a non believer and thought in Feb they were going out of business.Now I wonder where he got that misinformation? Surely not from a Sanofi rep, since that would have been unethical.
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Post by kball on Dec 9, 2016 12:12:37 GMT -5
Thanks for sharing how Afrezza has impacted your lives, stories like this really need to be heard !! It would be great if you could share this with Mike Castagna, (@castagna2011) and Mannkind, (@mannkindcorp) on twitter. Thanks again Merry Christmas 🎄 Mike knows all about me. He helped me with the medical necessity letter. My Endo and I actually almost got into a fight. I was ready to punch his lights out. He was a non believer and thought in Feb they were going out of business. If you saw the letter he wrote you would think he was bipolar. My control allows me to eat what and when I want. Even when I'm sleeping and eating in the middle of the night. I love it. I challenge anyone to have a lower A1C than me taking any other meds. Won't happen. Hey Hill, you're one of the apollo astronauts to many of us here who have been following some early adopters with amazing results. Can you shed any light on a theory of mine...basically i felt Sanofi invited the vocal early adopters to that san diego meeting, and had them sign those non disclosure agreements to shut them up and kill afrezza just before they announced it publicly. If you care to or can comment?
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Post by hillsave on Dec 9, 2016 12:21:22 GMT -5
Mike knows all about me. He helped me with the medical necessity letter. My Endo and I actually almost got into a fight. I was ready to punch his lights out. He was a non believer and thought in Feb they were going out of business. If you saw the letter he wrote you would think he was bipolar. My control allows me to eat what and when I want. Even when I'm sleeping and eating in the middle of the night. I love it. I challenge anyone to have a lower A1C than me taking any other meds. Won't happen. Hey Hill, you're one of the apollo astronauts to many of us here who have been following some early adopters with amazing results. Can you shed any light on a theory of mine...basically i felt Sanofi invited the vocal early adopters to that san diego meeting, and had them sign those non disclosure agreements to shut them up and kill afrezza just before they announced it publicly. If you care to or can comment? I have always believed (IMHO) that the board of directors of SNY didn't want to proceed with Afrezza because it would compete with their other drugs on the market and the ones waiting to be approved. The CEO got fired by the board because he went forward with the deal. Then they brought in a new CEO with marching orders to sink the ship on Jan 1, 2016 but don't let it look so obvious. In August 2015 one of the Sanofi reps called me from a regional meeting with 10 other reps in the room listening to me speak about my experience. They wanted to put me in a bottle like a genie and speak to their Dr's. Their hands were tied to what they could say about Afrezza. Again this is just my opinion.
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